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Friday, June 24, 2011

Good Reports

We made another 24 hr trip to Duke this week for several appointments for both girls. Good reports all around. Tricia lungs continue to show no signs of infection. Gwyneth continues to grow and develop, and she has finally broken the 25 lb mark...only took her about 2 years to go from 20 to 25!

Gwyneth had her first visit with a new doctor. She is now officially diagnosed with mild cerebral palsy, which we had assumed for a now. She continues to wear her AFO (ankle braces), but is making great progress. She is falling less and less while walking on her own, and is now able to step up and down short steps.

We're also making plans for Gwyneth to have another dual surgery...eye muscle surgery for her stabismus which has returned, and another ear tube placement as her first set has recently fallen out and she is continuing to experience ear infections. Hopefully these can both happen on the same day in the same ER as before.

While we were at Duke waiting for mommy to get done with her appointments, Gwyneth and I walked over the the gardens for a few shots...

38 comments:

You know, sometimes a diagnosis is hard. But sometimes having a name to say "This is what it is!" helps. I'm not sure where y'all are in that...but I hope that having an official name for things will be helpful and everyone is comfortable with it.

Hi Nate - I've followed you and Tricia's blogs for a long time now and just had to tell you, I think those first two pics on the blog, in the garden, are two of my favorite pics of sweet Gwyneth. What a sweetheart. Thanks for sharing and so glad to hear how the check-ups went.

Gwenyth has such a sweet face. I hope it is a relief to get confirmation of what you suspected. Personally I think it's best to know the truth and move on with the business of living life. I'm glad to hear Tricia's still doing well. Good luck with the surgeries.

Such a sweet, joyful, beautiful, face. Gwyneth is perfection. Hopefully having this official diagnosis will only make it easier for her to get the kinds of appointments and services she needs. So glad she and Tricia got good reports.

oh my she is getting so big and so pretty! i just can't get over every time i see her the changes. also, so happy to hear the good health report for Trica. I will keep praying for both your girls! God is good!

oh my she is getting so big and so pretty! i just can't get over every time i see her the changes. also, so happy to hear the good health report for Trica. I will keep praying for both your girls! God is good!

My Addie just had that same eye surgery and her second set of tubes put in a month ago! She also has mild hearing loss. I hope they can do the surgery's at the same time, it makes everything so much easier. Gwyneth is just beautiful! I love these new pictures!

I love, love, love your updates! Gwyneth is doing so well! I find inspiration in reading of her progress. My husband and I adopted a large sibling group last year, and our daughter is the same age as Gwyneth. She also has mild Cerebral Palsy, wears leg braces, glasses and had the stabismus surgery last year. Though our little Peanut isn't walking on her own yet and also has hydrocephalus, I see so many similarities. It is comforting in just knowing we are not alone in this journey. Miracle babies (not to mention Tricia's journey) certainly do make you all the more aware of the preciousness of life and love.

Hello. I have been reading your blog for a while (since your little girl was born). I work with children with autism (some have other special needs too). I am glad that she is healthy and doing so well even though she does have a few challenges. I think with wondeful parents to fight with her and her determination, your little girl has a bright future. My biggest advice (as someone who grew up with a different disability, Asperger's Syndrome) is to do everything possible to prevent bullying and to educate Gwenyth when she is old enough how to advocate for herself.

I can't believe how big Gwyneth is getting! She looks so much like both you and Tricia. My daughter Lily had Sure Step AFO's for a few months, and they were wonderful for her. She doesn't have CP, but she does have reflex integration delays, which can affect gait patterns, coordination, speech, etc. (You mentioned the falling. I know all about that.) Within 5-6 months, Lily had completely outgrown her need for AFO's. She still needed some additional foot support, but we found that Keens and kinesio tape/e-stim nearly eliminated the need for foot orthotics. We still could have gotten them, but in other ways they were limiting her progress, so we opted not to. I know how my heart swells when I see how much Lily can do now that she couldn't have done even a few months ago. I'm sure you guys are so excited with Gwyneth's progress as well! She looks great, and I'm so happy for your family!

Start Here

If you are new to the Confessions Of A CF Husband Blog, and you don't have several hours to read every post, you may want to get to know us quickly by Reading This First.

Meet The cfhusband

My name is Nathan. My wife, Tricia has Cystic Fibrosis (CF) and had been preparing for a double lung transplant until we discovered we were pregnant. Surviving a premature birth, double lung transplant and lymphoma is just the beginning of our story.Tricia is the most incredible person I've ever met. She keeps me humble and in love.Gwyneth is our beautiful daughter, born 15+ weeks early, weighing just 1lb 6oz.Tricia is now breathing with the help of donated lungs, and Gwyneth is on her way out of the NICU and into our hearts.This is our story from my perspective...